P-04-408
Child and Adolescent Eating Disorder Service - Correspondence from
the Petitioner to the Committee, 17.05.17

Dear
Mr Hedges

Thank
you so much for considering the petition that I submitted some 5
years ago, and which the last committee felt was important to keep
on the agenda.

I am
extremely grateful to the now Minister Health Wellbeing and Sport,
Gethin Vaughan, for taking time to respond to your letter and for
considering this important topic.

I
wonder if a rough outline as to how this petition came about, and
also what has been achieved over the years might be of some
help?

Over
the years I have kept my personal experience to the minimum,
deciding that the X factor sob story is not my style. There is one
though!

In
2009 our then 15 year old daughter was diagnosed with anorexia
nervosa. A high achieving A grade student had the bottom of her
world pulled out from under her, as did we as a family. We took her
to the GP within weeks of realising something was drastically
wrong. All research indicated that early, specialised intervention
was, and remains, key to recovery. (Neural pathways are laid down
in mental illness, in children this is highly malleable at the
early stages of the illness... The sooner these thought patterns
are realigned, the quicker the recovery. The brains of those
affected by malnutrition are not in a fit state to access help for
themselves, thus families become central to the treatment, whilst
refeeding is used to promote full nutrition alongside
therapy.http://www.maudsleyparents.org/whatismaudsley.html)

Unfortunately, the
specialist service was not available in CAMHS at that time in our
area. Our daughter was told she was 'not ill enough' to warrant a
referral to the expert in North Wales, Dr Glaze. The long and short
of our story is that our daughter is still unwell with anorexia. We
have taken her privately now (at great cost to us, but that has
been our choice), and she is in a strong recovery at present. She
is about to graduate from Durham Uni having read
Anthropology.

I do
not have a bone to pick, I merely saw there was a need in CAMHS in
Wales, to have investment.

The
Eating Disorder Framework for Wales (2009), was put together for
the benefit of adults with eating disorders. A million pounds, ring
fenced and annual, was put in place for adult teams.

The
thought then was that CAMHS could manage EDs in their general case
load, and indeed did. Research and understanding has changed over
the years, and the magnifying glass of early intervention has swung
back to CAMHS.

The
£250,000 for South Wales, given in 2013 by Mr Drakeford, was
a nod to this very fact.

I
intend for the now Minister for Health and Sport to give the
remaining £750,000 that is outstanding for the rest of Wales
in alignment to that which is given for adult services.

This,
as I have said many times, enhances a better outcome for health
boards expenditure on people who suffer for longer than is
necessary.

To
treat early, with effective evidence based treatment in an
effective specialist way, causes the person with the illness to
recover quickly!

Out of
adversity comes strength, and I decided that I needed to understand
these illnesses and so be able to help our daughter, and indeed
many other families.

My
thought remain that I want no other family to go through what we
have, knowing now what I do: these illnesses can be recovered from.
They are to all intents and purposes 'curable', with effective
treatment.

I have
been fortunate enough to be asked to participate in the Cross Party
Group for EDs as well as being a carer representative on the Eating
Disorder committees, Transition Sub committee and Research
Development Group for eating disorders here in Wales.

I have
over these past 7 years also been on the EDIC (Eating Disorder
International Committee) planning committee, I am a managing
trustee for Charlotte's Helix, and a member of the FEAST (Families
Empowered and Supported in treatment of Eating disorders,www.feast-ed.org)
task force for the UK. I am also an individual rep for
PAVO.

I was
also asked by Public Health Wales to represent carers by giving
talks in the refresh of the framework last year.

There
is no choice to eating disorders, much as there is no choice to
appendicitis or a broken leg, heart disease, an autoimmune disease
or breast cancer. None of which would be labelled as a disease of
'silly girls', these are serious, destructive physical illnesses as
anorexia or bulimia are mental illnesses.

Eating
disorders, especially anorexia, have the highest mortality rate of
any mental illness, and this remains to this day.

Some
people are genetically predisposed, with personality traits that
may or may not cause the 'perfect storm' to occur, with
environmental and social triggers being on the very edge of the
loaded gun as to why some people succumb to an eating
disorder.

Research into
mental illness is beginning to uncover what is going on in the
neurobiology of the people affected, as well as the
genetics.

As you
may know the petition has given the last Health Minister, Mark
Drakeford a leaping block to investment into CAMHS eating disorder
services, which has brought much needed funds to create a new
service based in the South of Wales.

As Mr
Vaughan rightly points out this service has provided training, both
remotely and in conference style, to many CAMHS teams across
Wales.

Dr
Davies is a skilled and specialised psychiatrist in the area of
Eating Disorders and brings a wealth of expertise and also the
Maudlsey Method, as a recovery model, for best evidence based
treatment for young people with Eating Disorders (ED).

I
applaud her and her team.

However, this
team, and indeed Dr Davies are part time. To be able to provide and
facilitate as much training as possible, I do think that further
investment, specifically in that team thus enabling expansion,
would be prudent.

Training of all
CAMHS teams across Wales takes time, and indeed the complexity of
eating disorders means that teams must keep training and thus
become embedded in the evidence base and practice with these
specific illnesses.

To
enable this I wonder if the minister would consider investing
specifically in all Health Boards to make 'virtual teams' more
robust, and within that provide dedicated staff for eating
disorders?

The
virtual teams that are in place, both in the north and south of the
country are making some inroads into the training and diagnosis of
patients.

The
current standing, as I understand it, is that existing staff carve
out some time from their job plans to undertake ED work. This
causes extra strain and less time investment into the already heavy
case loads.

Dr
Glaze in North Wales (NWAS, North Wales Adolescent Services) runs a
multidisciplinary team (MDT) specifically set up for the early
intervention in eating disorder treatment, named aptly SPEED. It is
centrally and locally delivered, and comprises of paediatric and
psychiatric consultants, psychologists, family therapist, dietetics
and is underpinned by the Maudsley method, which as Mr Vaughan
rightly realises is the best practice for treatment.

The
very fact this team is early intervention for referrals from across
North Wales and North Powys is exemplary.

This
has been set up with little funding from central government and
needs more investment. The referral rates are massive and not
enough time can be given to it, as there are other needs in CAMHS
for Dr Glaze to turn his hand to.

He has
an empty ward, which if more funding were given, could potentially
be opened to the SPEED team and an outpatient setting specifically
for eating disorders.

The
south of Wales would benefit greatly from paediatric expertise and
influence. Perhaps, as in North Wales a dedicated paediatrician to
ensure sufficient and combined expertise.

The
'middle' of Wales needs some attention, as there is a population
who do live in these areas!!!

To
underpin all of these thoughts we should return to the Framework
for eating disorders, which as Mr Vaughan mentioned, was refreshed
last year by Public Health Wales.

In Dr
Khesh's summary of findings from the refresh he quoted the Together
for Children and Young People initiative:

"Previous reviews
of specialist CAMHS in Wales have identified that the service is
under more pressure than ever before, and inspire of additional
investment and staffing, does not have the capacity to meet demand
(PWH 2011)"

He
goes on to point out: "Over the past 4 years it is reported that
there has been over 100% increase in referrals to CAMHS, this adds
to waiting times of children needing specialist
services."

He
highlights that there are some hotspots (my words) that need
looking at, namely Powys and North Wales which are repeatedly
flagged during the process by carers and service users.

Now,
these findings clearly cover adult services as well, especially in
North Wales, however, it remains a problem in Powys especially in
the delivery of CAMHS services for eating disorders.

The
NICE guidelines for EDs is being released imminently, and at the
time of writing this, have not as yet been released. They will need
to be looked at as to how to go forward with the refresh of the
framework. Dr Khesh in the Public Health refresh document also
suggests a re writing of the
framework.http://gov.wales/docs/dhss/publications/160824eating-disorderen.pdf

I am
aware that monies have been negotiated for all eating disorder
services across Wales to the sum of £500,000 annually. I am
also aware of the thoughts as to what this will be spent
on.

The
holes that will inevitably plugged with this money, will not be be
at the grass roots of early intervention, but will be used more
broadly.

As a
summary then, I still stand by the fact that the Welsh Government
have a duty to provide more funding specifically for the Early
intervention within CAMHS for eating disorder treatment. This needs
to be specifically for staffing and the rolling out of the already
seen to be improving outcome services.

An
injection into already functioning, and seen to be improving
outcome measure services provided both by Dr Glaze and Dr Davies,
plus an injection to all health boards specifically for ED services
in CAMHS potentially increasing the VC service, thus enabling staff
to concentrate their efforts into the treatment of children and
adolescents at the onset of these illnesses.

Thank
you again for taking the time to read and understand the thoughts
behind this petition.